TGIF - Thank God (AKA Morgan Freeman) I'm Fabulous

Thursday 27 June - 1am

Here I am at 1am lying in bed with a seriously dodgy stomach. I'm scared to go to sleep in case (God forbid it) I accidentally 'shart'. The shame of it. Can you imagine actually shitting the bed? Ah man, I just want to be normal. 

My new tablets (amitriptyline) have given me the worst constipation ever so I resorted to desperate measures and took a load of laxatives the day before yesterday. Nothing happened. I took some again yesterday and NOTHING. So I just took another load again tonight and now I'm scared. Really scared. I'm scared to move or  laugh. I thought I'd take my mind off it by blogging. I'm not sure you want to read about this but hey, its relative as its about the side effects of my meds - I'm not just some random girl talking about sharting for the hell of it. This is my life right now. This is serious.  Lupus aint fun man.

I've had a rough day today. I've mostly been in bed in a lot of pain feeling extremely weak and totally sorry for myself. Poor, poor me.  The pain hasn't been all over my body, just in my hands but its been intense, like nerve pain. I was crying at one point which is not something I usually do. I finally managed to conjure up a tiny amount of energy to have a bath at about 3pm, got back in my pj's and mixed it up a bit by lying on the sofa in the living room instead of going back to bed (highlight of my day that was) and that's pretty much where I stayed.

I found out Sinead O'connor has fibromaylgia - apparently she gave up working for years because of it. Also, Morgan Freeman has it too. I was like, wow! God has fibromyalgia.  
I don't know why but I always see Morgan Freeman as God. Maybe because he plays God in quite a few movies? I'm not sure. Is that weird? 

Sami's mum had an operation today to correct some previous surgery so I suggested to her husband if she has to stay in overnight we can go to Pizza Express for dinner rather than him be home alone but luckily Viki was allowed home. So hopefully she will recover nice and quickly and be back to her fittest self in no time. 

I had my hair cut yesterday which was a nice treat, courtesy of my lovely Mummy. She treated us both and I must say, I'm rather pleased with the result! Feel like I haven't had decent hair for aaaagges. I also had it coloured the day before courtesy of Sami's mums friend and ex colleague, Janet. She did some lovely hi-lites for me and for a very good discounted rate. I am very pleased indeed.  And here's a nice selfie for y'all...for some reason this light makes my roots look darker than they actually are..

Prior to having my hair cut I went to see my GP to discuss how low I've been feeling recently and she has referred me for some counselling so I should hear back soon. She also explained to me that fibromyalgia can cause a chemical imbalance in the brain thus causing depression (yeah I just used the word 'thus') which I found interesting. She also said that perhaps I should be on an anti-depressant. Like a proper one not the one that I'm on to relax my muscles. I understand her reasoning but I'd much rather try alternatives first as opposed to swallowing even more tablets - who knows what they do to our bodies?? We'll see what happens. It was nice to go and have a chat with someone who took the time to listen to what I had to say. 

I haven't been feeling too bad this week, I feel down with all the pain etc but in a 'normal' way not in a 'Ohmygod what will kill me quickest - jumping out the window or putting my head in the oven?' Kind of way. So I would say its been a good week!

I'm so glad tomorrow is Friday. I know I don't work anymore so everyday should feel like the weekend but Fridays are just great. Everyone's happy. 

This weekend my plans are to go out on Saturday night and the rest of the time I'll be chilling and moaning about my life! I'm seeing my bestie for lunch tomorrow before she heads off on holiday and that's it. I was supposed to go to a charity gig for the meningitis trust at my old school tomorrow but I've been feeling crap all week so decided I should leave it. Its for an old school friend who is in a band (Urban Prophecies) sadly his daughter contracted meningitis and had to have her legs amputated - I'm happy to say that she got through it and is one of the most inspiring and beautiful little girls ever. So as I'm not attending I shall make a donation to the trust anyway.  

Here is a link to their song for the Meningitis Trust....http://www.youtube.com/watch?v=EDc8FahNOM4 

Going to have a girly one on Saturday (hopefully I'll be able to) and head out to a Turkish restaurant. I'm really looking forward to it.  No idea what to wear as the sun has caused me some troublesome symptoms such as a rash all over my legs. If you are not aware, most people with Lupus are sun sensitive. The suns UVA and UVB rays can cause Lupus to flare. People get different symptoms such as skin rashes, dizziness, fatigue, nausea, joint pain and some people's lupus can flare up so bad they can become seriously ill with organ involvement. 

I have never really had any adverse effects from the sun but the past few days I have noticed I feel a lot worse if I've been out for a while. I get home and feel like absolute shit, much worse than when I went out. I feel sick, dizzy, really tired and weak - I couldn't even cook Sami dinner yesterday. I couldn't even open a bottle of water - I was a state! Also, my skin itches like a bitch and my legs are bright red.  I'm going to have to get into the habit of covering up and wearing factor 50. Fun times. Maybe I'll get a sun umbrella and walk around like I'm Joan Collins. 

Right, I'm going to try to sleep now. Wish me luck! Poor Sami. Its him you should feel sorry for - he has to put up with me!

G'night. Xxxx 

20 Things That Annoy the Shite Out of Me...

Just for fun I thought I'd do a post about all the silly little things that annoy me...

1. Odd socks. WTF? Don't do it.  Stop being lazy and find the matching pair you lazy Douche-Lord!

2. When you're in the office and someone types really loudly.  Seriously some people need to be bitch slapped. With a chair.

3. People taking fucking ages at the cash point.  They decide its the time to check the balance for ALL of their accounts.  You huff and puff and they still don't get the hint to HURRY THE FUCK UP.

4. When you're waiting for the green man so you can cross the road safely and someone comes along and presses the 'Wait' button as if you didn't know what to do! I already pressed it! I know how the road works!

5. You go to use some sellotape and you can't find the start of it! Arrrrghhhhh!!! Why does this always happppeeeen!

6. You leave your phone at home and panic all day only to get home and have no messages or missed calls.  Oh right so no one loves me then.

7. People that don't make the best of themselves.  Sort your face out! You can do better!  Pluck your eyebrows, dye your roots, wear make up, HAVE A WASH!  I don't want to see your mess.

8. When your computer freezes just as you're typing a really important message. I have actually thrown the laptop when this has happened.

9. Every Saturday evening when I don't win the lottery even though I convinced myself 'This is it Today I'm winning big!'  Nope, no you're not.

10. When people chew chewing gum and suddenly think they're a big boss.  Idiot.

11. Anne Hathaway.

12. When someone has read your message and doesn't reply. I know you've read it because the two little ticks mean you've read it  so why haven't you replied? EH? Because I'm pretty sure if I saw you in the street and said 'Hey, how are you?'  You wouldn't just stand there and completely ignore me. 

13. Parking signs that don't  make any sense -   'Monday-Friday 7am-5pm but not between 12pm-1pm except for Sunday at 11am when the fat lady sings and a bald man walks past' Arrrgh! Just tell me when I can legally park here!!! 

14. Being tagged in unflattering photos. When tagging please look at the photo and ask yourself, 'Would Faye like the world to see this photo of her with her double chin and wonky eye?' If the answer is no, then don't tag me in it!!! I will get you back. Or maybe kill you...

15. Jealous bitches on nights out.  You can barge me, push me, give me a dirty look but I don't care.  Its not my fault I am so fabulous and you are not.  Go home and get over it.

16. Constipation. When you're busy.  I DO NOT HAVE TIME FOR THIS SHIT. Literally.  Hurry up!

17. You're waiting in a long queue (in Marks and Spencers) and the slowest woman in the world is in front of you, she's bagged up all her things and now she's putting her change in her purse and making small  talk with the cashier when you've been waiting half your life to buy some freaking percy pigs! Arrrgh just go! GO WOMAN!

18. Your skinny/beautiful friends constantly uploading their bikinni pics on facebook  GO AWAY! I've just eaten a whole bag of kettle chips and drank a bottle of wine and now I feel like shit.  Thanks.  Skinny bitch.

19. People with weird and totally unnatural eyebrows.  I'm not sure where this craze came from but you do not look good.  You look weird.

20. Stickers on the bottom of shoes.  No. Just No.

This Is My Fibro: Famous Faces of Fibro: Author Kristine Cheney

This Is My Fibro: Famous Faces of Fibro: Author Kristine Cheney: I was very excited to learn that a real author followed my blog. So when Kristine Cheney agreed to do an interview I knew that my Famous Fac...

No Carbs My Ass!

Friday 21st June 1013

Well the no carbs diet didn't last long (1 hour to be precise) - Sami and I went to our favourite Italian restaurant for dinner last night and I had 3 courses! Lol! I had a Caprese salad to start, haddock wrapped in parma ham for my main and a tiramasu for desert.  BAD FAYE! Oh well feck it I don't care.  I'm in pain  all the time so I've got to enjoy myself somehow and eating is one of my favourite things to do.  Oh, I also had a white wine spritzer.  Never mind.  I did go for a 40 minute walk to my parents house beforehand though so I did kind of earn it.  I went to see my Dad to give him his Father's Day card (only 4 days late) and Sami picked me up on his way from work and we decided we couldn't be bothered to cook so went to Risto instead.

I've got my ex work colleagues Megan and Lexie coming to stay today, they're going to come over around 2pm and we are going to have a girly/pamper/Disney DVD day.  So excited.  I've put some champagne in the fridge too as it was Megan's birthday on Tuesday.  Will be nice to have some girly company.  Sami's on his annual summer outing with work and he's going for drinks after so we've got the flat to ourselves for a few hours.

Lexie, Megan and Me....This was taken about a year ago on a night out.  Not sure what was so funny!

Its Tonya's birthday today (Sami's sister in law) I was going to pop around about 12 but she's going out to see her Nan so we'll go and see her tomorrow.  I haven't seen her for ages.  Its hard because when I'm really unwell like I have been the past couple of weeks I can't really go anywhere or see anyone and then on the odd day I do feel well I have to try and fit everyone in! Yesterday I was feeling good in the afternoon so went and saw my Dad but didn't get a chance to see anyone else.  There are so many things illness restricts you from doing.  I never knew my illness would be so debilitating.  Oh well just make the most of the good days I suppose.

Sami's sister, Ela is officially a home owner today! Ela and David have bought their first home together.  I am so pleased for them and I hope they have many happy years in their new home. xxxxx

Right I need to tidy up a bit before the girls come round.  Will fill you all in on the rest of the weekend on Monday.  Bye for now xxx

Monday 24th June 2013

Friday was lovely - was so nice to catch up with the girls.  Megan lives in Reading so Lexie and I don't see her that often.  We had such a laugh and ended up dancing from about 11pm till 1am! Good times.

Unfortunately it all went wrong the next day, I woke up at about 7am and had to run to the toilet where I was violently sick. After about half an hour I went back to bed and Lexie said she'd woken up about half an hour before and was ill too! Megan was fine luckily but Lexie and I were really unwell. We just laid on the floor in the living room for about 4 hours in a right state. It was bad! Megan left about 11am and Lexie stayed on the floor until about 3pm.  We could barely move.  I have no idea what caused us to be so sick but I think it was a dodgy batch of sausage rolls or perhaps we just eat and drank too much and all the dancing probably didn't help! Never mind.  I've lost the half a stone I wanted to so I guess it's not all bad.

I was supposed to go out for Tonya's birthday in the evening but I was just too exhausted. I had an early night and woke up Sunday feeling pretty awful. I had stomach cramps and my body was aching. I'm actually laughing because my luck is so bad!! As if I need this on top of everything else. 

I spent all of Sunday day time lying on the couch watching the Sex and the City boxset feeling a bit sorry for myself and in the evening Sami and I went to see Ela and David in their newly purchased home. Its lovely. I can't believe they've bought a house! So excited for them. We had a little celebratory glass of champagne and a Thai takeaway for dinner. Was yum, I eat loads! It felt like my stomach was completely empty! We saw Emrah, Tonya and Em-J briefly - they were leaving as we arrived. I miss Em-J! I haven't seen him since before his 2nd birthday on 7th June! Bad auntie Faye! Will have to pop in this week and spend some time with him. 

Its Monday now and I've woken up feeling pretty shite. My stomach is fine but I'm aching like hell. I wonder if its because my medication is out of my system after being so sick on Saturday? Well either way I'm feeling awful! Its times like these I thank God I don't have to get up and go to work. Giving up work is probably one of the best things I've ever done. I really hope one day I can go back to work but for now I think its the right thing to do. 

I usually have a plan for the day but today I am just going to relax and learn Turkish - I've got a book and an audio book on my Ipod so I shall sit here and listen to that and do sweet FA.. My muscles are aching so much so I'm going to listen to my body and chill out. Hopefully I'll feel a lot better tomorrow and I can do some exercise.  I'm going to Sami's Mum's house tomorrow to have my hair hi-lited so I could walk there. I'll see how I feel. 

I've finished watching the Sex and the City boxset now and I feel really sad! I miss those sluts! It feels really weird. I'm not sure what I'm going to do with my time now? I'll have to find a new boxset to watch. Suggestions welcome....

Miss you guys

So to sum up my weekend I had fun but I was really sick and now I'm dealing with the aftermath. I bet you wish you were me? Haha NOT! I don't mean to sound moany but I really do hope something good happens to me soon.

DIEt

Tuesday 18th June
After all the recent bleakness, black clouds and boo hoo poor me stuff  I have decided I am going to sort myself out and get my shit together. 

Firstly, I need to lose some weight and that aint gonna happen whilst I sit on my lard-arse crying (well, that's if you can call wailing like a banshee crying) and eating huge bars of chocolate. So first of all I am going to ensure I go for a walk everyday - except the days I am unable to walk (obvs). Secondly, I am going to arrange a doctor's appointment in order to get counselling because let's be honest I need that shit. Then, I am going to get on top of the housework and stop all this fecking wallowing in my own self pity. I don't know how Sami puts up with me I really don't. He's an angel. My Angel.

Wednesday 19th June 
I'm feeling a lot more positive today after having a word with myself yesterday.  I've spent the day shopping with my Mum and bought myself a new white dress for Tonya's birthday drinks on Saturday. I got it home and noticed there are foundation stains on it. Including one right by the arse - it looks like I pooed myself!! So I have to take it back tomorrow. Never mind shit happens. But who puts foundation on their arse!?

I also tried on this cheap white dress and sent a pic to Sami saying 'Look, Sami, I've found my wedding dress' Heehee! He just laughed. Not sure he was too amused. 

Anyway it was nice to get out and spend time with my Mum, we had a lovely day and a nice lunch and now I'm sitting at home watching Sex and the City thinking I want to be as skinny as these skinny sluts. They are sluts aren't they? They all shag anything and everything that looks at them. Anything that even gives them a sideways glance.  In this episode Carrie is basically being dry humped against a wall by an old man she met 5 minutes ago. Wtf? she's in her 40's! You can't go around dry humping in public.  Anyway in order to be a size nothing with sticky outy collar bones I'm thinking of cutting out carbs. I can't believe how much weight I've put on recently. Sami told me to STFU and stop going on about it but I just don't feel right. To top it off my new tablets have given me the worst constipation ever (seriously, as if living with illness isn't bad enough you also get all these side effects from all the different meds) I think that might also be contributing to my feeling like a whale. A beasty, blubbery whale. Ok maybe I am being a bit silly. But I'd like to lose a few pounds and get back to my pre lupus diagnosis weight.

Wow, Lupus really is a biyartch and as for its mate Fibromyalgia well she's also a bitch and she can fuck off too. One day they will runaway together and I'll be pain free, energetic and bouncy like a bunny. One of these days I tell you.

Right no carbs for a week. Can I do this?  I WANT BREAD!!!!

Thursday 20th June
Shit motherfucker shit fuck!! I have woken up feeling battered. I am even having trouble writing this. My whole body feels bruised and tender and I'm aching all over. Shitting hell, one day out shopping = one day in bed.  It's the price you pay.  I totally need someone to come and sing 'Soft kitty, warm kitty' to me.  Anyone? No didn't so. 

I knew this would happen. Mum wanted to go shopping today instead of yesterday but I've got my old work friends Megan and Lexie coming over tomorrow so I said to my Mum let's go shopping on Wednesday instead and that way I get a day to rest before Megan and Lexie come over.  Its bollocks having to plan your life around an illness but I guess that's what I got to do now. That's just the way it is. I'm slowly learning how to pace my activities but I find it hard because I used to be able to do lots of things and now I can only do one thing a day and sometimes need to keep the next day free to recover!

Ok so my plan for today is to chilllllll.  I was going to start my exercise regime but I can't now because I'm in too much pain (I'm never going to lose weight at this rate) I'm going to get washed and dressed then probs nap as that will knacker me out then I'm going to sit on the sofa and relax. I feel like I've been run over. Twice. 

Must repeat to myself all day, 'No carbs, no carbs, no carbs.' 
I WANT BREEEEAD! 'No carbs, no carbs.'

Don't you think its funny the word die is in diet?? Hmmm says a lot really doesn't it.

The Dark Side of Chronic Illness

The Dark Side

(Shit defo been watching too much Starwars! Damn you Sami!)

This is the dark side of living with chronic illness and pain all day every fucking day. Today I am not doing good at all. I can't even be bothered to try and raise a fake smile. I can't be bothered to move any muscle let alone ones that allow you to smile. 

I'm going to write all my feelings down and share them as I know other people with a chronic illness will feel my pain and I want you to know you are not alone.  We can't all be positive all of the time and no amount of positive thinking will 'cure' us. Despite what some fucktards might believe/advocate.

All I've done today is lie in my bed crying. I feel like I'm never going to stop. Sami is trying to cheer me up but unfortunately its not working like it usually does. This makes me feel bad because all Sami wants is for me to be happy but right now I'm not and its no ones fault its just something I'm going through at the moment.

Its Father's Day today and I want to go and see my Dad but I'm in so much pain and I cannot stop this crying. I don't want him to see me like this - Sami agreed. My thumb is agony I can't even lift a cup, it feels like something is going to tear when I move it.  My arms and legs feel heavy, I'm in pain everywhere including parts of my body I didn't know were there and my head is pounding. On top of all that I feel really down and shitty. I'm even having disturbing thoughts - I'm thinking, 'How can I continue to exist like this?' 'Seriously how?' I'm also thinking, 'I can't go on like this'. I can't do it.  I've got enough tablets and alcohol to say good night forever. 

Don't worry - its not something I would actually do but these are the thoughts that are currently going through my head. I feel bad thinking it and I'd never do that to Sami or my family and friends but this is what its like to be in constant pain. You think about ways you can stop hurting and sadly that is one of the ways. Bit extreme but hey, if you haven't experienced pain like I have then you won't get it and if you have I bet you're nodding in agreement. And if you have experienced intense and relentless pain and aren't nodding in agreement please let me know your secret.

Sami said to me earlier, 'Don't worry you're new tablets will kick in soon and hopefully you'll feel better'. Perhaps he is right but the fact is, I've been in constant pain (albeit varying degrees of) every single day since December and before that I had many more bad days than good, I was just lucky to at least have SOME good days. Something that is now a distant memory. These new tablets aren't a cure - they are just supposed to make it easier to live with. So it will still be there.  I said to him most people would struggle if they felt like I did for a week. I've been like this for nearly 3 shit years and I'm only 27 - how many more years have I got to live like this? 30? 40? 50? It doesn't bear thinking about. Maybe there will be a cure in my lifetime but I'm not going to put all my energy into believing that. Especially with the pharmaceutical companies making so much money out of me and others with long term illnesses. Our pain is their gain.

I just want to be me again. The old me. The fun-loving, crazy, hyper, energetic me. The me I like. I hate this me. This me is rubbish.  All I do is whine and complain and sleep. This me is shit and miserable and just wants to lie in bed wallowing in self-pity with greasy hair (yuk). This me doesn't even like socialising. The old me LOVES to socialise and be around people (and have clean hair).  What is happening to me!? Lupus is happening to me. And Fibromyalgia is happening to me that's what's fucking happening to me. Pain and more pain. Its destroying me and right now I'm letting it.

This pain is unbearable. I think I'd rather be stabbed. How am I supposed to cope with this for the rest of my life? How is anyone? I'm living in HELL.  Is it even possible to cope with this for the rest of your life? I've even thought to myself 'Oh why can't Lupus just get on with it and attack my organs and be done with me?' Then I'd die and be pain free. How fucked up is that?

I know, its horrible and I'm sure it makes for uncomfortable reading but I said when I started this blog that it will be an honest and open account of my life with Lupus including the highs and the lows. So here I am. This is me and here are the lows.

I haven't openly expressed these thoughts to anyone. Ever. I don't want to upset people or inflict any more worry. No idea why I find it easier to write it all here for all and sundry to read! I sort of forget people are actually reading this.  It's weird because people that don't know me must feel like they do because I really do tell it like it is - no fluffiness or sugar coating here.
Its like therapy for me because I feel like I write it all down and then those thoughts are out in the world and gone from my head. Does that make sense? Probs not! But that's how I feel. I'm already starting to feel a little better. Well, I've stopped crying for the first time in hours.

I want to blame my new tablets for why I'm feeling so down but I guess I should accept that feeling down comes with the territory of living with a chronic illness (or two).

I just spoke to my Mum to let her know I'm not up to coming to see Dad and she said its fine and to just accept that I'm having a bad day, have it, embrace it and wake up tomorrow in the hope it will be a better day than yesterday. I think that was good advice.

So here I am embracing the shitness. I'm going to eat a whole bar of chocolate and have a glass of red. I'm not supposed to but I don't give a flying shit. Times like these you need a glass of good quality (strong) wine. The only thing is, that involves getting up out of my pit. Ok I'm gonna do it because I'm embracing the shitness.

To anyone reading this feeling the same way, please feel free to send me a message or add me on facebook. I'm a good listener (as well as talker!) Or maybe try out what I've done and put to pen to paper. Its very therapeutic, almost like letting go of your emotions. I genuinely feel a little bit better. No one should feel alone during times like these.

Right where is that chocolate.....

Monday 17th June 2013 

That was yesterday. I ended up eating three big bars of chocolate which is so unlike me. I'm usually quite controlled when it comes to my diet. Oh well when you're depressed it has to be done.

I'm feeling pretty much the same as yesterday.... I've spent most of the morning crying. I'm not even dressed yet and its nearly 2pm. The flat needs hoovering, I've got ironing to do and I can't be bothered to move. I have no motivation whatsoever and I'm in a lot of pain so that's not helping.

I spoke to my Mum and she said its ok to wallow for a few days but only a few days. Weeks and months, No but a few days Yes. She said it wouldn't be normal if I didn't wallow occasionally with the amount I've got to cope with. She said we can't all cope all the time. Right now I'm really not coping. I admit it. I've decided I'm going to call my doctor and ask to be referred for some counselling. I've never had counselling before and it might not be for me but I'm going to give it a go. What have I got to lose? I've already lost my sanity!

So today I am going to allow myself to wallow. I'm going to have a bath, put some clean pj's on and then I'm going to get back in my bed and stay here for the foreseeable.

Is there a light at the end of this tunnel?

Hey everyone,

Well its a been a mixed few days since Wednesday. I spent most of Thursday on the sofa wearing my pj's feeling sorry for myself. Lexie came round in the evening armed with a whole load of chocolate and we sat and ate our way through most of it! I really fancied a glass of red wine but under docs orders I'm not allowed until I've been on this new medication for a couple of weeks so I was a good girl. 

I had a rough nights sleep - y'know the usual, night sweats and nightmares but surprisingly and oddly on Friday I felt fine. Not a lot of pain and I wasn't exhausted. I had a walk down into Beckenham and got myself a new hair dryer (I have the worst luck with these, I think I've had about 5 this year) and in the evening Sami and I went to our friends Matt and Jen's engagement party at a pub over in wimbledon. By the evening I was feeling a bit tired and as Sami didn't want to drive to Wimbledon I wasn't looking forward to the 20 min walk to the station and the hour long train rides to get there but it wasn't too bad. The pub was really nice and they had a bbq so we got some burgers and chatted with everyone there - we know most of them so that was nice. I did have a shandy but nothing else. We left about 10.30 which is so unlike us - we are usually the last ones standing but I didn't wanna be on the trains too late plus I was knackered and people were starting to get drunk which I wasn't feeling so off we went. Woke up Saturday feeling like I had the worst hangover ever! Pounding head, nausea plus aching all over. I thought what the feck? Did I get run over by a combine harvester last night???!! So Saturday was spent lying on the sofa in my pj's. Sami cooked us a nice curry and I was made to watch starwars. Sami is obsessed with getting me to watch It so I've finally agreed (only took him 6yrs). 

This ran me over in my sleep....I'm not sure which is worse this or Starwars?

Today I'm feeling like absolute shit. I am in a lot of pain and I feel really, really low. Another day on the sofa it is then. Well, I'm going to go and see my Dad as its Father's Day and Sami wants to take his Dad and Christine out for dinner so I might go along depending on how I'm feeling. Its days like today that make you think how lucky you are. I've been blessed with a wonderful Dad. He did so much for us growing up and he always had time for us. He'd never say go away I'm busy. He worked hard to provide for us and he'd spoil us when he could.  He is a great Dad. My Mum is amazing too she is such a great role model, she always worked so hard, managed to keep a lovely clean home and never complains. I am very lucky.

That made me go all teary.  I'm feeling so low and I don't really feel like seeing anyone which is unlike me. I want to hide under the covers away from the world. I'm struggling to see the light at the end of the long, dark tunnel at the moment.  I guess I'm not coping as well as I normally do. I think its because the pain has been so bad. Worse than usual and when you're in so much pain its hard to imagine or remember what its like not to be in pain and you feel like its going to last forever. It takes its toll mentally as well as physically.  Someone slap me with a wet fish!!! I need to get out of this frame of mind and sort myself out. I'm  not sure how?!  I think counselling might be necessary now. I'm finding it harder and harder to cope and the more I struggle the more down I feel.  Gosh today is not a good day! Let's hope I wake up in a better frame of mind tomorrow. Jesus I hope so! I've cried far too much already today. 

I shouldn't really complain. I have a friend in Australia who has Lupus and its attacking her brain. 3 areas showed up with inflammation. She is currently being looked after in hospital and she said she might not leave. I told her she can't give up as we need to go to Vegas when she is better so she said she won't. Its awful what this Lupus can do. She's only just turned 30. I hope and pray everyday that she will recover. She's so beautiful and has her whole life ahead of her. Keep strong Lisa!!

So you know I was diagnosed with Fibromyalgia on Monday? Well someone (somewhat controversially) has suggested that Fibromyalgia doesn't actually exist and its Lupus attacking the brain. With fibro the brain sends out pain signals to the muscles, other symptoms include anxiety, depression, memory loss, fatigue, night sweats and aches and pains - these are some of the same symptoms as Lupus. When I was diagnosed I initially thought that Lupus caused me to have fibro because I'm always in pain and it might have scrambled my brain and caused it to go all weird. But then I thought how comes fibro has all the same symptoms as lupus? Is it not just lupus? However, lupus shows up in blood tests but fibro doesn't and people can be diagnosed with just fibro and not Lupus. But this person was saying to me that its a misdiagnosis of Lupus. I said but Lupus would show in tests and this person told me that if Lupus is attacking the brain then it doesn't show up in
tests but would show up in an MRS scan. I find this interesting and will certainly speak with my rheumatologist about this. I'm not saying this person is definitely right but I think its food for thought.

Well I'm going to peel myself out of bed, have a bath and go and see my Daddy. Catch ya laters. X

Chocolate is good but shoes are fat free!

So not feeling positive today. In fact I'm feeling like shit. I'm pissed off, I'm bored, I'm in pain and I'm fed up. This is complete and utter hairy bollocks. 

I can't believe I've got to wake up everyday and cope with some form of pain. Today its pretty much all over. My whole body is aching, I've got shooting pains in my hands and feet and my thigh muscles are spasming. Plus I feel exhausted. The pain is really bad today, it's the sort of pain that makes you say, 'Oooooowwwwww' out loud. So I'm lying in bed, holding back tears and saying 'Owwwwwww!' Every few mins. If anyone could see me they'd think I'm nuts. 

The worst thing is, this pain is coming from my brain. My own brain is making me believe I'm in pain and I can't control it. So frustrating. I just feel so weak. I'm still getting my head around all this fibromyalgia stuff. Wtf? I now have this as well as everything else! I thought it was hard enough without adding this to the mix of shit! 

I've just eaten a family sized bag of maltesers after eating super healthy all week. Oh well sod it. I'm sad and in pain and I'll eat a whole load of chocolate if I want to. Lord knows if anyone needs to comfort eat right now its me. Highlight of my day that is. 

Well the highlight of my day has changed! I am now the proud owner of a pair of Christian Louboutin heels! My lovely friend Becca just called me to say she's at a sample sale and asked if I wanted a pair.  Ermm hell yeah! She's picked me up a pair of black Louboutins at a fraction of the usual price....these are now mine...all mine!

Not that I have money to spend on designer shoes but I'm going to put a whole load of clothes and shoes on ebay to make up for it. I can't wait to collect them and wear them alllll the time! I'm gonna hoover in them, take the rubbish out in them, hell I'm even gonna wear them to bed! I mean, that is where I spend most of my time so I might as well! Aaaaahhhh I have Louboutins!!! Woooo! This has made me smile even more than the huge bag of maltesers I eat earlier.   Chocolate is good but shoes are fat freeeee!

Sami is so sweet he was just telling me about what he learnt about fibromyalgia today and he said he liked my blog post yesterday. He supports me so much. He's always researching things for me, encouraging me to rest and eat well and he always reminds me to take my medication which at the moment is a god send because I have no idea what's going on. The amitriptyline has really effed me up! I feel so spaced out and floaty all the time. You know when you first wake up and you feel a bit hazy? Well I feel like that all day. I am so glad  don't have a job anymore otherwise I'd be screwed. I'm not even sure I should be left on my own at the moment. This is weird. The doc said I should only feel like this for around a week. I hope he's right!

My old boss sent me a nice message today saying that he can't believe I've added a new illness to my list. He said he doesn't know how I cope. A lot of people say that and I never know how to respond because I don't know myself. I guess chocolate and new shoes help! 

Right time for me to take some more amitriptyline or as like to call it - amitrippingout and erm probs just sit on the sofa like a spaced out weirdo. 

This is what my brain is like at the moment....

Let's hope tomorrow is a better day!

Fuckyoumyalgia

Monday 10th June - evening 

After being diagnosed with another illness today it really got me thinking and I am just so incredibly lucky to have such supportive friends and family around me. And I'm lucky to have such a caring and considerate boyfriend. They all make living with this shit bearable. 

I speak to people with Lupus and other chronic illnesses who have really unsupportive boyfriends/husbands/family and I just think wow what would I do if I were them? I would not cope. 

I often think people not going through this do not understand how it feels but my loved ones try to understand and that's what's important.  And those that don't care and don't try to understand well they can just piss off because they have no place in my fabulous life.

I've just take my new tablet (I'm on 10mg of amitriptyline which is tricyclic anti-depressant - they aren't used as anti depressants anymore as they discovered they work for chronic pain and they relax the muscles) oh wow it feels wonderful! My muscles aren't hurting for the first time in like, forever! They've stopped spasming and everything.  I don't know what to do with myself. I want to jump around but I can't because I feel quite drunk. I just brushed my teeth and I had to hold on to the sink. I feel all floaty and super relaxed. Wow this is amazing. I love my life. I love my friends and my family. I love Sami and all his family and I just love everyone. I may have lupus and fuckyoumyalgia but its ok because everything else in my life is good. Good night. 

Tuesday 11 June 2013

Lol! I wrote that last night. It sounds like I'm high or something.

I have recently discovered that chronic pain is different to acute pain.  So with this fibromyalgia pain killers don't really work hence why when I had morphine a couple of weeks ago it didn't even touch the pain.  With chronic pain it comes from the brain so to treat it with anti depressants kind of makes sense because they change the way the brain sends out pain signals (basically I have a dodgy brain. Yep my brain is dodgy). Who knew?!   Another good thing about treating the pain with anti-drepressants is that Fibromyalgia can also cause depression plus living with shitty illnesses can obviously make you depressed too so hopefully by taking amitriptyline I will ward off any depression.  I kind of enjoy learning stuff like this.  When I was first diagnosed with Lupus I was obsessed with it.  I think I know much more about it than most GP's do!  So now my new obsession can be Fibromyalgia.  I'm gonna be an expert.

So after taking the tablet last night I woke up this morning and felt really spaced out. I didn't even know what day it was! I'm feeling fine now though. I am going to have to watch made in chelsea again on catch up tv as I know I had it on last night but I don't remember anything that happened! The doctor said for the first week I will feel a bit funny when I take this tablet but he said it will fine after a few days to a week. He said it will take a month before you notice any real difference with your pain. I'm hoping it does work because I'm in a lot of pain today and I mean a lot. I'm aching all over with stabbing pains, bad knee pain and I feel exhausted to the point where I can't stay awake. I need to muster up some energy from somewhere as I have got to have a shower. I hate not having a bath or shower twice a day. Its now 2pm and I'm still in bed, in my pj's. I feel manky. Plus I had bad night sweats last night. So I need to get up and sort this shit out. Right I'm gonna do it. Yep I'm doing it....

Ah that's better! I'm now nice and clean and fresh. Need to now muster up the energy to go and make some lunch. Ah really can't be bothered.

I was gonna go with my mum to her hospital appointment today but I'm just so exhausted, I literally can't do it. I feel so bad but I know she understands as she suffers with fatigue too. One of the hardest things to deal with when you have an illness is the guilt you feel when you say you'll go somewhere or do something and when it comes to the day you can't. I hate that. Luckily as I said earlier all the people in my life who matter try to understand and they never make me feel bad about it. But you can't help but feel guilty or annoyed with yourself. Just one of those things. Hopefully I'll learn to deal with it better as time goes on - I'm still quite new to all this chronic illness malarky! Stupid chronic illnesses trying to destroy me. Aint gonna happen. I'm going to embrace it, I'm going to hug it and say, 'Hey! Come on, show me what you've got!' And then I'm going to deal with everything head on, I'm going to laugh at it, smile and say, 'You will not get me down or ruin my positive attitude. You can mash up my body because that's beyond my control but you can't take away my smile or my laugh' No way.  So bring it fecking on!

Right time for lunch. 

I just had some lunch - tuna pasta with spring onion and I'm still hungry. My appetite is massive. I need to sort it out. I'm scared this new medication is going to make me gain weight (its listed as a side effect). I really don't want to gain weight! Why can't the side effects be weight loss and extreme beauty? I'm just going to have to keep an eye on what I'm eating. I've also realised the box says to avoid alcohol. Omg. This does not make me happy. I love my wine after dinner. I love cocktails on a saturday night and a glass of vino with Sunday lunch. I just love to drink! Hmmm maybe this isn't such a bad thing after all as I probably should cut down a bit. I'd just like to be able to have the occasional glass of wine but I'm not sure I can. Some people are saying its fine and others are saying no way.  Maybe I'll have a small glass of wine at home and see how it makes me feel. It will be a little experiment. 

I have officially given up my job now for good now.  I am un-employed. I just wasn't coping and I tried to stay on a couple of days a week but it did me in. I'd be on my back for 2 days afterwards so there is no point. And now that I know I have fibromyalgia too I need to relax and chill out for a bit. I'm hoping this new tablet will make a difference. My lupus is pretty much under control according to my blood work so its just getting this fibro under control and then I might have a life again. The kind of life I want. 

Its nice to know I don't have to get up for work at the moment as this morning I was a mess! So at least I can take time to adjust to my new medication, chill out get this under control and then maybe I'll be able to get a part time job and get my life back together. Woooo! That's what I'm going to keep in my mind. 

Ok I think I've waffled enough for one day. I'm going to spend the evening relaxing and watching shite on tv. Catch y'all later. Xxx

Saw this and made me laugh...

A bit like when you leave your phone at home for the day and you panic and when you get back home there are no messages or missed calls. Lol!

'If you were a horse they'd have you put down'

Monday 10th June 2013

I had my long awaited appointment at the Lupus unit at St Thomas' Hospital in London today (where I'm treated for my Lupus).  I was really looking forward to it as I was hoping the professor and I would discuss a new medication regime as I've been so unwell lately and thought my medication must not be working.  Well  it turns out it's not the medication that's wrong.  It's my brain.  Yep my brain is officially dodgy.

I was diagnosed today with Fibromyalgia.  I've long suspected I could have this but have never been formally diagnosed until today.  So I can add that to my ever increasing list of shitey illnesses.  If you are not aware, Fibromyalgia is an illness whereby the brain goes a bit weird and sends out pain signals to your fibrous tissues causing widespread (and sometimes severe pain) all over your body.  Other symptoms include extreme tiredness, IBS, memory problems, dizziness, sleep problems and headaches, all of which I have been experiencing for the past 6 months.  I've put a link below for more information....

http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Symptoms.aspx

So there you have it, I now have Systemic Lupus, Sjogrens Syndrome, APS AND Fibromyalgia.  There is no cure and its a life long thing.  Apparently to reduce the pain you have to reduce stress where possible, pace yourself and learn ways to relax, oh and do exercise (when you're not in severe pain) so I need to figure out how to relax as I'm not really sure I know how...

The doctor has prescribed me with an anti-depressant (a low dose) which has been proven to help your brain stop sending out random pain signals.  So I'm hoping this will provide some relief.  In a way I'm glad as at least all the pain etc isn't being caused by really active Lupus as when Lupus is active it can be dangerous and even fatal in that it can start attacking your organs so at least with this fibromyalgia business it doesn't cause any actual damage, it's just a bastard to live with.  So although it's shit to be diagnosed with an additional illness on top of everything else its good to know so that I can manage it, learn to deal with it and hopefully get it under control and kick it's fucking arse into oblivion .

Living with daily pain is hard work, its mentally challenging as well as physically because you got to try and keep your shit together otherwise you will just fall apart and its not nice for those around you to see.  I really hope I don't go down the depression route because its so easy when you live with chronic illness but somehow I've managed to keep my head above water so I just hope and pray I stay that way.

I dread the day I have a lupus flare up and a fibro flare up! Look at me already nicknaming it 'Fibro' it's like we go way back.  I think I need to give it a new name like fuckromyalgia or something.  It doesn't deserve a nice nickname.

As my charming Dad once put it 'If you were a horse darling, they'd have you put down.'  Gotta love him.

My mum came with me to the appointment today which was nice then we went to a couple of shops and she bought me a couple of nice tops and nice new dress so that cheered me up.  I got a new dress to wear on Friday (Sami's uni mate Matt and his fiance Jen are having an engagement party) so I'm looking forward to that.  Its nice having something to celebrate.  The only  thing I'm worried about is when I meet new people and get asked 'So what do you do for a living?'  I mean how am I supposed to reply to that? No one wants to hear well actually I spend most of my time crying in bed with severe pain from Lupus, Sjogrens and Fibromyalgia and my brain doesn't work! LOL! So I said to Sami I need to come up with something really obscure.  I think one suggestion was to say I'm a proctologist (thats an arse doctor to you and me) so if any of you have any better suggestions please let me know! I might say I'm a neurosurgeon. Although I don't think anyone would believe me with my ditzy personality!  So that's something I need to think about.

Right I'm going to go and have a bath and attempt this relaxation business....hopefully with my new tablets I'll be able to get a decent nights sleep and not wake up like a zombie.

Champagne and Pain

Sunday 9 June 2013

I've had an OK week. Bit up and down. I went to work Tuesday and Wednesday then spent all of Thursday in bed. I Went out with my best mate, Sil after work on Wednesday for a few beers was nice to catch up but Thursday was bad. I literally slept for the whole day.  I think I'm going to have to stop working all together now as it effects me too much. 2 days at work put me on my back! 

So Friday I was in a lot of pain all day. I couldn't really straighten my arms, it felt like my biceps were swollen.  We had Sami's mum and husband over for dinner and I was close to cancelling but we haven't had them over for ages so I didn't want to cancel and then it be ages again and I actually felt a lot better by the evening. Sami and I got the champers out to toast their recent wedding so that was nice.  

It was Sami's nephews 2nd birthday on Friday and I didn't get a chance to go and see him but Sami popped in on his way home from work. We bought him a sandpit so I hope he enjoys it.  He is adorable.  I felt really bad not seeing him but I was in bed most of the day and then I had to cook.  I feel like a bad auntie!

The dinner was a disaster! I'm usually quite a good cook but I really effed it up on Friday. I'm not with it at all lately. The brain fog has been pretty awful, I'm actually a little bit scared. I've got my hospital appointment tomorrow so I'll chat with the doc about it.  He sent me for an MRI scan last time I had bad brain fog so I'm sort of hoping I don't have to go for another one. I did not enjoy it! I felt really claustrophobic and nearly had a panic attack.  

We went out to a Turkish restaurant last night and then on to a bar to meet up with Sami's football friends. Then we went on to a club. It was Sami, me, Sil and Michael, Lexie, Tom and Joe, Graham and Claire. We had a good night apart from me getting started on by 3 different people. 

Wow, bitches be crazy. One girl barged me on purpose with her elbow and it was hard, I turned around and smiled at her and she smiled back. What a douche. Then I was wearing a guys hat just being drunk and everyone was passing it around then this woman who I assume was his wife pulled the hat off my head (along with some hair) and stormed off. What the hell? Sami told me I wasn't allowed to say anything to her because he didn't want an argument and she was with some of his friends so I just left it and she was clearly mental anyway.  Afterwards we went on to a club and I noticed so many girls just seem so angry. Lexie and I were in the toilets and this girl started shouting at us asking, 'What the fuck are you looking at?' I managed to diffuse the situation but bloody hell! I'm not sure what was going on last night but wow I've never experienced so many angry people. We went home shortly after and I was glad to be honest. When I go out I like to have a good time I don't get people that go out and start fights? Why would you do that? Idiots. 

Here's Sami with the belly dancer in the restaurant....

He was so enthusiastic he managed to pop a button on his shirt! 

So now I'm just chilling in bed. I'm feeling quite good apart from these dizzy spells I keep having. I'm just going to chill out today and relax. Sami's gone to his Dads and as much as I want to see them I decided to stay in bed. I can barely stay awake today I'm so knackered! 

Lexie and I yesterday, ready to go out on the town...

I'm looking forward to my hospital appointment tomorrow. I've kept a lupus diary since my last appointment and I read it yesterday and it is seriously depressing. Oh my god my life is not fun. I have pain every single day. Some worse than others but feck me when you see it on paper its awful. Somehow I cope. No idea how! I guess having such great friends, family and a Sami keeps me going. 

I really hope the doc will figure out some new medication for me that will reduce the amount of flare ups I've been having. Here's hoping!!

Biscuit!

Monday 3 June 2013 

Hey readers and fellow Lupies! I hope you are all well or as well as can be.

I've had a relatively good weekend. It was Sami's birthday on Friday so we went out for dinner with all his family. It was nice to all be together but the meal was a bit on the shite side. Never mind. Sami enjoyed his and it was his birthday so that's all that matters really. 

Ela and I made Sami this baked blueberry cheesecake (with the help of Ela's friend Beth) Sami loved it! It did taste good.

recipe: 

http://www.channel4.com/4food/recipes/baking/cakes/cheesecakes/baked-blueberry-cheesecake-recipe

Ela was very sweet and washed up after while I slept. I was knackered. I'd used all my spoons. Please see the spoon theory story if you have no idea what I'm banging on about! 

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Sami went on a helicopter thrill ride on Saturday (I was not happy about this). I worry about things like that. He got home safe and sound so it was ok. His Mum's husband, Chris invited him. It was a birthday present for Chris from his daughters and there was a spare seat going to Sami went along and I stayed at home worrying out of my mind like a weirdo.

When he got back we were due to go to a party. (Sami's best friend Graham's brother and wife (Rob and Lucy) were celebrating as they are having a baby) but unfortunately I wasn't really up to it. I've had a lot of dizziness and brain fog recently and the only thing that helps is laying down so I basically spent all of Saturday in my bed! I was also super tired. I had a bath and didn't even dry my hair. Shock! Horror!

I was gutted I couldn't go to the party as I was looking forward to seeing Rob's friend Nuala. She reads this blog and we met once at Lucy's hen party and just hit it off. She has moved to London now so I'd like to be friends. Nuala messaged me and said we can meet for a coffee instead so we'll do that soon. I love making new friends.

Yesterday Sami and I popped out to get a birthday present for his nephew who will be 2 on Friday. We got him a little sandpit so exciting! Then Ela came over for dinner and we just chilled. I was fine all day until about 7pm when the dizziness and foggy feeling came on. Its weird, I keep feeling like I'm going to pass out. I had to stop doing the washing up half way through the other day as I genuinely thought 'Shit! I'm going to faint'. No idea what that's all about. I'll talk to my lupus doc about it when I see him next Monday. I can't wait to see him and hopefully get some new medication because my current stuff is NOT working!

I think the dizziness I'm experiencing is caused by of of my medications (mepacrine) because I had severe dizziness for a month in January and at the same time, I decided not to take mepacrine anymore as it tastes disgusting and I didn't feel like it was having any affect and the dizziness went shortly after I stopped taking it. I've recently started taking it again and I'm dizzy. I doubt its a coincidence. Other than that I'm feeling good. Oh, I do have a sore eye - check it out:

It kills, I can barely open it. No idea what's caused it. Lupus is one evil, weird and stupid disease.  I have literally had pain in some form everyday since December. How I'm still sane I have no idea.  

I've decided I'm going on a diet this week. I can't cope with these extra pounds I'm carrying at the moment. Plus the summer is here and I don't want to be covered up in baggy clothes, feeling depressed and fat.  I'm not far off wearing elasticated trousers.  This thought makes me shudder.  And on that note I feel I have to share something with you all - Sami's Mum is a hairdresser and used to work in Sami's Dad's salon (he is a hairdresser too) and one day this little girl looked out of the window at an elderly person dressed in beige and asked Viki (Sami's Mum) 'Viki, why do old people dress like biscuits?' This cracked me up! And since then I can't help but notice that old people DO dress like biscuits.  When Sami and I are out we'll say 'biscuit' about 20 times.  See if you notice it now...

I've never really been on a diet so I'm not sure want to do. I'm thinking 3 meals a day, no snacks, smaller portions and obviously healthier options. I don't think I eat badly, I cook fresh food every night, most things from scratch (I hate packet food), I don't eat lots of junk, I hardly ever have take aways or fast food but I do eat a lot. My dinner plate looks like a mans and at only 5ft (just) I should be having smaller portions. So I'm gonna start this week. I want to lose a stone and get back in my size 8 clothes. Sami says that's too skinny (he likes me at a size 10 and I'm a 12 at the moment) so we'll see. I was a size 6 when we met and he wasn't complaining then! He's very sweet and tells me I look nice every day. He says I don't need to lose weight but I'm not comfortable at the moment.  

Its just weird for me as someone that's always been slim to suddenly start gaining weight. Not only do I have to battle this fucktard illness but I also have to deal with weight gain due to the medication. Arrrgh. So annoying and I don't have the money to buy bigger clothes!

Never mind, I guess there are worse things to complain about. 

People say oh why don't you just exercise? I wish I could reply, 'Are you stupid? Would you be able to exercise with swollen joints and muscles and extreme exhaustion? Would you?!' Or people say just go on a diet. For those that don't know, steroids give you the appetite of a beast! Plus they cause your body to retain water and salt which also causes weight gain. I mean perhaps I just have no will power but the hunger they cause is immense. I actually feel sick if I don't eat. I feel like I can never get full. So simply going on a diet is really difficult. I just wish people would think before they speak. Seriously. Lupus has taught me that people really can be ignorant twats.

Right, I'm going to get up and do some housework now considering I'm feeling OK. Sami will tell me off and say I should be resting but when I'm feeling good I like to get shit done! 

Catch ya later x